title: Development and evaluation of a decision aid for BRCA carriers with breast cancer.
abstract: BRCA+ breast cancer patients face high risk for a second breast cancer and ovarian cancer. Helping these women decide among risk-reducing options requires effectively conveying complex, emotionally-laden, information. To support their decision-making needs, we developed a web-based decision aid (DA) as an adjunct to genetic counseling. Phase 1 used focus groups to determine decision-making needs. These findings and the Ottawa Decision Support Framework guided the DA development. Phase 2 involved nine focus groups of four stakeholder types (BRCA+ breast cancer patients, breast cancer advocates, and genetics and oncology professionals) to evaluate the DA's decision-making utility, information content, visual display, and implementation. Overall, feedback was very favorable about the DA, especially a values and preferences ranking-exercise and an output page displaying personalized responses. Stakeholders were divided as to whether the DA should be offered at-home versus only in a clinical setting. This well-received DA will be further tested to determine accessibility and effectiveness.
authors.affiliation: Division of Clinical Cancer Genetics, Department of Population Sciences, City of Hope Comprehensive Cancer Center, Duarte, CA 91010-3000, USA. jculver@coh.org
authors.forename: Julie O
authors.initials: JO
authors.lastname: Culver
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: MacDonald
authors.forename: Andrea A
authors.initials: AA
authors.lastname: Thornton
authors.forename: Sharon R
authors.initials: SR
authors.lastname: Sand
authors.forename: Marcia
authors.initials: M
authors.lastname: Grant
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: Bowen
authors.forename: Harry
authors.initials: H
authors.lastname: Burke
authors.forename: Nellie
authors.initials: N
authors.lastname: Garcia
authors.forename: Kelly A
authors.initials: KA
authors.lastname: Metcalfe
authors.forename: Jeffrey N
authors.initials: JN
authors.lastname: Weitzel
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology* / Q000601:surgery; D003661:Decision Support Techniques; D005260:Female; D017144:Focus Groups; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D006580:Genetic Carrier Screening; D005817:Genetic Counseling; D006801:Humans; D008408:Mastectomy; D010052:Ovariectomy; D040242:Risk Reduction Behavior